1. < Polymyalgia Rheumatica (PMR)

Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Posted by Ethan McConkey, Moderator @ethanmcconkey, Dec 18, 2019

Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.

Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

skiing | @skiing | Mar 11, 2022
In reply to @kmeikle1 "Don't taper until you're feeling reasonably well. If you do, the inflammation will slowly accumulate and..." + (show)
@kmeikle1

Don't taper until you're feeling reasonably well. If you do, the inflammation will slowly accumulate and you'll have a flare. We all have a plan, but unfortunately we have to let the disease dictate when and how much we taper. Remember the average duration of PMR is 5.9 years (according to Mayo) and your objective is not a relentless drive to 0 prednisone. What we're trying to do is find the lowest amount of prednisone to keep the pain at bay. Once you get to 10 mgs., you might try reducing by half a mg. If I were you, I'd go back to 10.5 until all is well. Then try 10 and if that works, wait a month and try 9.5 again. I hope that gets you back on track.

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Thank you for your advice I agree 100% I thought my last 1mg deduction would be 10.5 to 9.5 then 1/2 mg after that each month
However pmr had a different plan so I am at 10.5 again with some morning soreness I will wait till that disappears then reduce as you suggest Al the bestb

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 12, 2022

I just ran across this amazing little book about PMR that I can really relate to even though my PMR is currently in remission. There's info on the last few pages that tells you how to order a printed copy if you would like one along with some resource links for PMR.

PMR: My Pretty Miserable Reality by Christine Knippenberg
--- https://read.bookcreator.com/B0azExaJsmVX10cC4clXfTHxYcn1/cJQ6edD3RvaTLyWt758IDA

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3 replies
sashakay | @sashakay | Mar 12, 2022
In reply to @kmeikle1 "Don't taper until you're feeling reasonably well. If you do, the inflammation will slowly accumulate and..." + (show)
@kmeikle1

Don't taper until you're feeling reasonably well. If you do, the inflammation will slowly accumulate and you'll have a flare. We all have a plan, but unfortunately we have to let the disease dictate when and how much we taper. Remember the average duration of PMR is 5.9 years (according to Mayo) and your objective is not a relentless drive to 0 prednisone. What we're trying to do is find the lowest amount of prednisone to keep the pain at bay. Once you get to 10 mgs., you might try reducing by half a mg. If I were you, I'd go back to 10.5 until all is well. Then try 10 and if that works, wait a month and try 9.5 again. I hope that gets you back on track.

Jump to this post

I really appreciate your post. I thought I was doing so well with tapering but 10 days of high stress (which I “arrogantly” thought I was managing ) showed me the reality of this condition. The body never lies 💞. Increased dose from 3mg to 5 mg and pain went within 5 hrs from 10+ to 1-2. A painful lesson but one I needed to experience 😖

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1 reply
sashakay | @sashakay | Mar 12, 2022
In reply to @johnbishop "I just ran across this amazing little book about PMR that I can really relate to..." + (show)
@johnbishop

I just ran across this amazing little book about PMR that I can really relate to even though my PMR is currently in remission. There's info on the last few pages that tells you how to order a printed copy if you would like one along with some resource links for PMR.

PMR: My Pretty Miserable Reality by Christine Knippenberg
--- https://read.bookcreator.com/B0azExaJsmVX10cC4clXfTHxYcn1/cJQ6edD3RvaTLyWt758IDA

Jump to this post

Omg. What a wonderful book. Thank you for sharing

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kmeikle1 | @kmeikle1 | Mar 12, 2022
In reply to @sashakay "I really appreciate your post. I thought I was doing so well with tapering but 10..." + (show)
@sashakay

I really appreciate your post. I thought I was doing so well with tapering but 10 days of high stress (which I “arrogantly” thought I was managing ) showed me the reality of this condition. The body never lies 💞. Increased dose from 3mg to 5 mg and pain went within 5 hrs from 10+ to 1-2. A painful lesson but one I needed to experience 😖

Jump to this post

It really is a "live and learn" condition. Stress (good or bad), diet, over-exertion, etc. can set us back. You're fortunate though to be down to 5 mgs. I look forward to that day.

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1 reply
kmeikle1 | @kmeikle1 | Mar 12, 2022
In reply to @johnbishop "I just ran across this amazing little book about PMR that I can really relate to..." + (show)
@johnbishop

I just ran across this amazing little book about PMR that I can really relate to even though my PMR is currently in remission. There's info on the last few pages that tells you how to order a printed copy if you would like one along with some resource links for PMR.

PMR: My Pretty Miserable Reality by Christine Knippenberg
--- https://read.bookcreator.com/B0azExaJsmVX10cC4clXfTHxYcn1/cJQ6edD3RvaTLyWt758IDA

Jump to this post

Thanks John. What a great read. I'll order a few copies to help my family and friends understand my experience.

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sashakay | @sashakay | Mar 12, 2022
In reply to @kmeikle1 "It really is a "live and learn" condition. Stress (good or bad), diet, over-exertion, etc. can..." + (show)
@kmeikle1

It really is a "live and learn" condition. Stress (good or bad), diet, over-exertion, etc. can set us back. You're fortunate though to be down to 5 mgs. I look forward to that day.

Jump to this post

I started on 10 mg 1 year ago (this is my 3rd episode of PMR) and was doing really well. Tittered very slowly to 5 mg then alternate days 5/4 then 4/3 for a month each time. 3mg seemed to be my tipping point plus stress and over-exertion. this forum is very supportive and informative - as a retired massage therapist I need reminding of how to take care of myself lol!

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kmeikle1 | @kmeikle1 | Mar 12, 2022

Prof. Dasgupta (a PMR expert often cited on HealthUnlocked PMR forum) is keeping some patients on 2-3 mgs. of prednisone rather than trying to reduce to zero. According to Dasgupta, the side affects are minimal and it keeps many from flares or PMR returning. Thanks for the reminder to self-care...I needed that today.

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1 reply
anniekirby | @anniekirby | Mar 13, 2022
In reply to @johnbishop "I just ran across this amazing little book about PMR that I can really relate to..." + (show)
@johnbishop

I just ran across this amazing little book about PMR that I can really relate to even though my PMR is currently in remission. There's info on the last few pages that tells you how to order a printed copy if you would like one along with some resource links for PMR.

PMR: My Pretty Miserable Reality by Christine Knippenberg
--- https://read.bookcreator.com/B0azExaJsmVX10cC4clXfTHxYcn1/cJQ6edD3RvaTLyWt758IDA

Jump to this post

Beautiful little book the cartoons made me laugh out loud! Thank you for sharing.

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jfannarbor | @jfannarbor | Mar 15, 2022
In reply to @kmeikle1 "Prof. Dasgupta (a PMR expert often cited on HealthUnlocked PMR forum) is keeping some patients on..." + (show)
@kmeikle1

Prof. Dasgupta (a PMR expert often cited on HealthUnlocked PMR forum) is keeping some patients on 2-3 mgs. of prednisone rather than trying to reduce to zero. According to Dasgupta, the side affects are minimal and it keeps many from flares or PMR returning. Thanks for the reminder to self-care...I needed that today.

Jump to this post

I was getting relapses so often that I went to 2.5 mg daily to control PMR

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